Monthly Archives: October 2017

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Spinal taps, also called lumbar punctures, are important diagnostic tools, not only for MS, but for a multitude of neurological conditions. A spinal tap can help uncover valuable information about your nervous system. We at MultipleSclerosis.net recently posted an article by our very own Devin Garlit’s called “The Joy of getting a Spinal Tap,” in which Devin discusses his spinal tap experience during his MS diagnostic journey. It was a hit! So many of our community members responded and shared their spinal tap experiences as well so we’ve compiled some of those stories to share with you!

The Numbers

In the article, Devin describes his experience with his second spinal tap. Some people may escape the spinal tap altogether, while others may have multiple lumbar punctures throughout their lives. Many of you weighed in on the varying number of spinal taps you have endured.

“My first and hopefully final spinal tap was horrible…”
“I have had 4.”
“Had one and will never ever get another one!”
“I have had 3 and will never have another.”

The Test Itself

Some of our members described the process in terms of the test itself, and described it as fairly simple and easy. Understandably, others found it to be quite the opposite. Whether you felt your spinal tap was a walk in the park or complete misery, your experience will be unique to you. No matter how you fell about the test, your experiences are completely normal.

“Mine was a piece of cake!”
“I had a very good experience. The procedure was over in seconds and I had to lay completely still for the next hour. My wife drove me home and I spent most of the next 24 hours as vertical as possible, drinking plenty of water. I suffered no ill effects.”
“My spinal tap was the worst thing I’ve ever gone through.”
“I barely felt the needle!”
“Worst experience ever. I cried the entire time.”
“Mine was easy- peasy!”
“Worst experience of my life, hands down.”
“I was lucky. I never felt a thing. No headache either.”

The Headaches

One other interesting thing Devin shared with us about his experience was how important it can be to listen to your doctor, lay down, and avoid activity afterwards. Severe headaches after the test, often referred to as spinal headaches, can occur. The spinal headache he described was an experience so many of you shared. Some of our community members even had to have a blood patch to relieve spinal headaches afterwards.

“I was nauseated and hit with the most painful headache of my life…So my advice with spinal taps is to listen to the doctor and rest up afterwards.”
“I was told to lay as completely flat as possible the whole day. And the headaches were like a caffeine headache, so soda was kept handy.”
“I had my spinal tap on a Friday and had to live with the headache until Monday when they could do the blood patch.”
“I had a spinal headache after mine as well. I had to get a blood patch. Thankfully the patch relief was instant, but wow that is a pain you never forget.”
“I had massive headaches for days.”
“By the time I had my third lumbar puncture, I learned to demand the magic words of BLOOD PATCH immediately following the procedure.”
“My spinal tap resulted in an absolutely massive headache that I couldn’t even lift my head up (and I rested as I was in hospital). I later had to have a blood patch & the headache disappeared immediately thank goodness!”

How about you? What have your experiences been like? We’d love to hear your stories! Although spinal taps are not always a pleasant experience, they can be quite helpful when it comes to learning more about your MS. Sharing your tips and experiences on how to get through this exam can help provide relief for other members during their future tests!

When one thinks about advocacy especially in this very heated political climate, there are certainly some tough connotations that have be dealt with, particularly in regards to the concept of lobbying. But in truth, the concept of advocacy does not have a political slant, and in the world of non-profits it is simply the act of representing the needs of people who do not have a voice within the halls of the US Capitol. MSAA, as a member of the broader MS Coalition, is proud to be an advocate for people with MS, and in turn an advocate for the greater disability and chronic disease community. Year in and year out, working with our partnering organizations within the MS Coalition, we sit down with members of Congress and their healthcare staffers to discuss issues of importance to the MS population. Some of these topics may include MS research funding, or enhancing the federal government’s commitment to understanding the true incidence and prevalence of MS within the United States, or matters related to easier access to durable medical equipment (DME). These are just broad examples, but they give you a sense of how wide-ranging some of these national efforts are.

But MSAA’s advocacy work doesn’t stop there. We also are actively engaged in issues at the state level. Utilizing local thought leaders, medical professionals, those living with the disease and other coalition partners, we advocate for the needs of the MS population in all fifty states where barriers and inequity may exist. For example, if an issue arises where an insurance provider may not allow for open access for all MS therapies, that is an area in which we would commonly take action. Another instance may be the availability of rehabilitative physical therapy for people with Primary-Progressive or Secondary-Progressive MS. if it impacts the MS community and can be addressed at the federal, state, or local level, MSAA is proud to take action and work with our partners to seek solutions for these issues with both elected and private entities.

In addition to our work “behind the scenes”, our organization also seeks to educate individuals living with MS and their family members about how to best advocate for themselves and the community they are a part of. Self-advocacy is one of the most powerful tools available to the MS patient, and it’s our goal to inform our clients about the strength of the individual voice when speaking on issues of importance. Your elected officials want to hear from you, and while they value my and my colleagues’ time when we visit their offices, the truth is you are their constituent and your experience as a constituent within the district they represent means even more. No matter what you’re able to do – be it an email, a phone call, or even the all-important in-person visit – that sort of self-advocacy not only benefits you, but it also allows you to represent all of the people with MS that cannot be in that room. And therein lies some really incredible power. In that way, your voice really can turn the tide.

Don’t be afraid to get started, and let us know how we can help. It’s what we’re here for.

*Kyle Pinion is the Director of Public Policy and Advocacy, as well as the Southeast Regional Director for the Multiple Sclerosis Association of America. Before coming to MSAA, Kyle was the Director of Public Policy and Advocacy for the National MS Society – Georgia Chapter where he acted as the chief lobbyist for the chapter in the Georgia State Legislature, and their staff representative with the US Congress.

Dealing with insurance of any kind can be a stressful experience for anyone if you aren’t familiar with the language and jargon used on the forms. Health insurance is no different – particularly when you are trying to make sure that the health insurance you have covers all of your health needs, including any regular therapies, durable medical equipment, specialist visits, and regular tests.

Navigating the world of health insurance can be daunting, but our Client Services team here at MSAA has a couple of resources that can help get you started on resolving your questions and issues:

Patient Advocate Foundation – The PAF provides case management for patients who are dealing with insurance, employment, or other legal issues related to their medical condition.

State Insurance Departments – This link will take you to a map of the United States with a link to each individual state’s insurance web page that can offer more information about the insurance laws and the insurance marketplaces available in your home state.

Life Happens – This non-profit provides information and resources to find life insurance, disability, and long-term care insurance policies/plans, and they can help you find a local agent to assist you with those plans.

You can also visit the main website for Medicare and Medicaid to find additional information about these two government-funded health insurance options.

This is just a short list of resources that you have at your disposal to help you work your way through your insurance questions. For more information about your particular question or issue, please feel free to reach out to our Client Services Specialists at (800) 532-7667, ext. 154 or at MSquestions@mymsaa.org.

Making my way through the medical insurance nightmare has been a challenge since being diagnosed with multiple sclerosis. It wasn’t something I thought much about before MS came along. I never really got sick so health insurance and my own well-being just wasn’t a priority. Talk about a learning curve. I was thrown into things head first and then bounced around a few times before landing hard with a thud.

My life was suddenly filled with doctor appointments, medications, unpredictable symptoms and massive medical bills. I found myself in this new world of the chronically ill and I didn’t like it one bit. To be honest with you, it scared me more than anything I had ever been through.

I think the first year after I was diagnosed, I spent much of my days in a mind numbing fog. I became overwhelmed with the vast amounts of information I found online about MS and the high costs associated with it. The more questions I asked, the more questions I had.

I became more concerned with being able to afford my co-pays and medical insurance premiums than with the latest phone apps or music downloads. I found myself searching for insurance plans that made MRI’s and durable medical equipment more affordable. I researched Medicare, SSDI and early retirement. I looked for ways to afford home modifications and accessibility aids.

I discovered that no one can look out for me better than me.

When I was searching for a supplemental insurance plan that would cover all the things Medicare doesn’t, the monthly cost was too high for me to be able to afford. So, what did I do? I got online and through asking tons of questions came across a foundation that helps people with MS pay their monthly insurance premiums. That was something I would have never known about if I didn’t dig around for answers myself.

I found that asking questions is the best thing anyone can do for themselves.

When the cost of my pain medication went up, again I got online and found that my Medicare drug plan had an exception form that can be submitted to request a lower co-pay. I had my doctor help me fill it out, sent it in and the cost of that one medication went from $45 a month to $3. The insurance company won’t tell you about that option in bold print on their home page. It’s something you have to ask questions about and search for yourself to find.

Then there was the time a few years ago when my powerchair was damaged in a car accident. I was okay but my chair got banged up a bit. I discovered that my homeowners insurance covers things like that. I was able to get a new chair to replace the broken one. Who knew homeowners insurance (or renters insurance) worked that way? I sure didn’t. Another lesson learned by again asking lots and lots of questions.

I don’t think I will ever understand insurance or how they calculate the costs associated with their services, but through asking tons of questions and digging around for answers I have been able to ease much of the costs associated with MS and living with a disability.

You have to be your own advocate, do your own research and never stop asking questions! You may not be able to control the progression of your MS but that should never stop you from taking control of your own health care.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

Recently I went to my primary care doctor for an annual flu vaccine and physical exam to make sure everything was in check. I paid my copay when I arrived at my appointment per usual protocol, but after reviewing the Explanation of Benefits (EOB) from my insurance company that came in recently, I realized the appointment was considered preventative and I should not have had to pay my copay amount. After noticing this I called my doctor’s office and they told me that in fact there was now a credit on my account of the copay amount that I had paid. They asked me if I wanted it to stay on my account as a credit or if I wanted to be refunded the amount. This made me scratch my head in perplexity, because I realized if I hadn’t reviewed my EOB from the insurance company and contacted my doctor’s office myself, I would’ve essentially been left in the dark about this copay credit until maybe I’d gone to my primary care doctor next year and was surprised with the copay credit on my account.

I feel like this happens often to individuals who are just trying to follow up with and maintain their medical care. I think this is why it’s so vital to be your own advocate when it comes to reviewing insurance information and benefits because there are not many on the other side that will do this for you, be it insurance companies or medical offices. Now don’t get me wrong, there may be some representatives who are diligent and careful in their work and do their best to ensure accuracy, however, this may not always be the case so it’s good to check and re-check things on your own as well. Human error can occur and mistakes can happen, but if you’re not aware of your own benefits and coverage this can slip under the radar and you could be paying for things out of pocket that you didn’t have to.

Insurance benefits and coverage can be a tricky thing to try to understand, so it’s important to take one thing at a time and to make contacts when you have questions. Calling the insurance company can sometimes be challenging so set aside time you know you can dedicate to this, or maybe your doctor’s office can help you navigate and understand your benefits. Sometimes you can use online customer support services to contact your insurance or connect to patient portals through your doctor’s office too. A relative, friend, neighbor or other resources in your community may also be able to help you decipher your insurance coverage. Again, you are your own best advocate when it comes to your care so being thorough and asking questions and reviewing your benefits is an essential part of the process.

Though it doesn’t feel like it in most of the country, Fall is officially upon us. There’s the activities and the get togethers. The smells and the lead up to… the holiday season! Arguably fall is my favorite time of year and easily also one of the most stressful. In gearing up for the pending holidays, trying to enjoy outings with loved ones and friends and preparing for the end of the year in terms of work and personal life (I’m someone who likes to file my taxes in January if I can help it to get them out of the way) I inevitably run into a wall of burnout. It’s not permanent and to be honest is totally avoidable if I just created some margin. I know, it’s easier said than done when the kids, the spouse, the job, the (insert religious organization you belong to), the neighborhood watch, the scout troop or sports team, the friends, the family…the lists go on… all need something and they need it soon. If you are anything like me you’re a doer. But doers…they need margin most of all. We have to build in safe guards and set boundaries to make sure that while we’re caring for and participating with others, we’re also monitoring and taking care of ourselves. That we don’t run into the situation that we run totally out of steam, burning the candle at all ends and find ourselves in the dark.

Like I said, it’s easier said than done but just think how much better you’d be if you weren’t laying under the desk completely done at the end of the week. So, what have I done to help create space and boundaries for myself? I have people in my life who understand my doer mentality and essentially pull the plug from time to time. They’re there and not only listen to the litany of items on my ever growing To-Do list but also challenge me and say ‘Can someone else pick up the donations from the restaurant’ ‘Who can you call to finish making the activities for the carnival’ ‘Do you need to volunteer to run another event’ and most importantly, ‘What have you done this week that’s just for you’. They ask not because they are nosy or because they are looking to judge or condemn me. No, they ask because I’ve let them in and given them permission to tap me on the shoulder when it looks like I’m headed for the red zone. And vice versa, I’m part of their team. Their team that pulls them from the edge when they’re baking for the 5th bake sale this month or about to volunteer to run the fundraiser that drove them insane last year. You should surround yourself with people who you trust to step into your life and help you keep up with the boundaries you need…not the Jones’ down the block. So how do you do it? How do you build in the buffer? Because creating space and implementing margins in our time and energy may not feel natural at first if you are a doer, but it’ll help keep you from smacking into the wall of exhaustion…and who doesn’t want that?!

Over the years I’ve appealed a lot of health insurance denials for different reasons. I’ve dealt with getting denied for claims, denied for policy coverage, and denied for pre-approval for certain treatments. Each time I open the denial paperwork, I can literally feel my blood pressure go up. Now I have something to deal with on top of everything else.

I didn’t learn how to deal with these things in school. Yes, I learned to read, understand text and problem solve, but insurance paperwork is formal, in small print, and not always clear. Getting denied creates an emotional response with financial consequences. I see people shut down when they need to read legal paperwork, and I’m saddened when it costs them money they didn’t need to spend. I’ve learned what to do by dealing with each denial one at a time. Thankfully so far, my experiences have been what I’d think of as the minor league level of insurance appeals where I was able to do them myself.

I’ve had to prove I’m not divorced or legally separated to continue coverage for my spouse. While we were in the process of getting divorced, I legally changed my name to my maiden name and gave them the judge’s order showing the name change. My insurance company wanted proof I wasn’t divorced. I was angry and completely stumped. How do I prove I’m not divorced? There’s not a judge’s document that shows a person is still married. By talking to insurance representatives, they finally were able to tell me what kind of documents would satisfy them. I had to provide them with our marriage certificate, my name change order (again), joint bank statements with the address they had for us, utility bills with both our names, and federal tax returns to show we were still filing as married. It took all of that plus a lot of effort on my part and time on theirs before they continued covering my spouse and re-processed his claims.

I had a provider that would bill the insurance provider and would receive no response EVERY time. We finally learned the routine. First, my provider would let me know the claim hadn’t been processed for a long time. I would then call the insurance company to ask about it, and the person on the phone would tell me it was in process and should be paid within the next week. While absurd and seemingly a tactic used to avoid paying, I accepted it as part of the process with that company and my provider.

I’ve formally appealed my insurance company’s refusal to cover my disease modifying medication at a dosage of three days per week. I knew the daily dosage worked for me, but I couldn’t find seven different areas on my body to do injections each week without body tissue breaking down. I tried two other medications and lived with terrible side effects for over a year hoping they would subside without success. While appealing the insurance company’s denial, I lived without any disease modifying drug for six months. It was stressful going without something that has been proven to slow progression of MS. Not knowing if it would get approved or how long it would take compounded the anxiety the process caused me. I wish it had occurred to me to look online for examples of appeal letters. While mine was effective, it took me a while to write and was stressful worrying that it wouldn’t be successful.

I’ve had bills come through that have been denied because the provider billed the wrong insurance company. Just the most recent bill would have cost me $750 out of pocket if I hadn’t been paying attention. It astounds me to think of all the money people are paying that they shouldn’t. All because it looks like every step has been done and they’re told the remainder is their responsibility.

I know people who think that yelling at the company helps. Personally, I think yelling at the customer service representative is a waste of time. That person didn’t create our insurance system and isn’t the one creating policy at the company causing your frustration. I think the people answering phones are just following orders and trying to keep their job to support themselves and their family. Letting them know you’re frustrated is useful. Yelling and not listening increases the amount of time it takes to figure out what the issue is and what will help. It adds to my stress level and makes my life harder. Advocating for my care doesn’t need to feel like a battle. By being friendly, I’ve had pleasant interactions with insurance representatives that have brightened my day.

What I think helps me navigate insurance appeals:

If you don’t understand the denial, call the insurance company and ask them to tell you what the reason was and what you need to do for them to approve or re-process the claim.

Be pleasant to the person on the phone. If I’m upset, I’ll tell them, “I know this isn’t your fault. I’m really frustrated, so please bear with me.” I can hear the person on the phone relax, and it seems they’re more willing to help problem solve my issue.

Accept that often you’ll need to provide things repeatedly. Sometimes it’ll be each time a claim is processed, others will be annually.

Maintain good records of medical bills and payments. See my blog post for tracking medical bills if you want tips or a system: Creating Some Order In The Medical Billing Chaos. If you haven’t kept good records, just call your insurance company and your medical provider to figure out what the status is and what you can do now.

Open all medical bills or insurance statements when received to see what they say. It’s tempting to put bills and other mail in a pile for later, but that’s a habit that makes it easy to lose track of paper and time. Waiting will only compound some issues and leave you with less time to resolve them. If it says it’s covered, you’ll know how much you owe. This may shape decisions you make regarding purchases. And sometimes it’s good news!

Keep copies of documents with medical insurance files so that you know what was provided in the past. It will also be ready to send again when they repeatedly deny coverage for the same issue.

If feeling the tendency to shut down, take a break. A few minutes or days may be needed to be able to work on it again. Usually appeal deadlines I’ve seen are 180 days. Know the timeline, and don’t wait until the end. Otherwise you’ll keep getting bills that can hang over you and cause anxiety.

Share your experience with friends or coworkers on dealing with medical appeals. They often have experiences of their own with advice that may help you in your situation. You may also be helping them be better prepared for dealing with their own insurance issues.

For writing appeal letters, look online for examples. I searched for “prescription appeal letter,” and found many terrific examples to follow. If you enter the specific name of the medication or device you’re trying to obtain with “appeal letter” you’ll find lots of tailored examples. If there isn’t one specific to your situation, use the others as a guide for how to convince your insurance company to approve it.

Remember you don’t always have to figure out everything on your own. Look for your resources. There are online suggestions from organizations about dealing with insurance. Friends and family can often break down the issue to a level that’s manageable. If the stakes are really high, you may want to get professional assistance with your appeal.

Having a chronic condition that requires ongoing medical treatment is already frustrating and draining. Learning how to navigate the insurance world and cultivating the patience needed to deal with it goes a long way. It can improve your medical care, reduce out of pocket expenses, and make life a lot easier than it might be otherwise.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

On October 15th Medicare’s open enrollment period begins and lasts until December 7th. It’s during this time period that you can review your current Medicare plan and make changes if needed. You do not need to sign up for Medicare each year, but this is an important time when you should review your coverage to make adjustments if necessary, to ensure your health insurance needs are being met. And with the government currently discussing change that could potentially impact different parts of the healthcare system, it’s also a good time to stay up-to-date on this news as it unfolds.

Medicare beneficiaries who have a Medicare Advantage plan or Part D plan should receive paperwork called “Evidence of Coverage” or “Annual Notice of Change” letters from your health plan showing coverage outlines and any changes that will occur. It’s very important to review these materials to make sure of any changes in the plan’s costs, providers, benefits, drug formularies, etc. so that if something is changing with your plan, you are aware of it and can make changes to your coverage, if needed. These plans can change their benefits so it’s crucial to review your policy and any upcoming changes.

So, what can be done during the open enrollment period? According to Medicare, you can do the following:

Something else to keep in mind is that if you are not satisfied with your Medicare Advantage Plan, you can disenroll from that plan and join Original Medicare during the Medicare Advantage Disenrollment Period. This disenrollment period is open from January 1st to February 14th.

The Medicare website offers a Medicare Plan Finder where you can search for and compare health plans, benefits, coverage and estimated costs. You can also contact Medicare directly at 1-800-MEDICARE (1-800-633-4227) for information and questions.

For additional help, you can receive individualized assistance and guidance in choosing coverage through your State Health Insurance Assistance Program (SHIP). This resource provides one-on-one insurance counseling and support, visit https://www.shiptacenter.org/ to find your local office.

Visual disorders affect more than half of all individuals with MS, which can make even simple tasks more difficult. Everyday things take more effort and more time when your vision is impaired in some way, including reading or doing anything online. In this day and age, almost everything can, or needs to be done online, making surfing the internet unavoidable. While many websites make an effort to be visually interesting and engaging, as well as readable, it can still be a challenge to read the information on your computer screen.

Every web browser is different, but there are some tricks that you can use to make your online experience a little easier when looking for information on the internet:

Font Size – If the type on a web page is too small, easily zoom in to make the font larger by pressing the “Control” key (on a Windows computer) or the “Command” key (on a Mac computer) and the “+” key. To zoom back out, press the “Control” or “Command” key and the “-“ key.

Clickable Content – An easy way to navigate around a page to find a link you are looking for is to hit the “Tab” key on your keyboard while on a web page. This will start where you are on the page and highlight the first link within view. To move further down the page, keep hitting the “Tab” key until the link you wish to click is highlighted. If you accidentally go past the link you wanted to click, press and hold the “Shift” key then press the “Tab” key to go backwards up the page. Press the “Return” or “Enter” key to click a highlighted link.

Cluttered Page – Most web browsers also offer the option of a “Reader Mode” which will remove ads, leaving only larger text and associated images, making the page easily readable. Web browsers that offer this mode include: Chrome, Microsoft Edge, Mozilla Firefox, and Safari. These extensions or settings may not work on every web page, but they can make the overall online experience a little easier.

For more details on how to adapt your browser to meet your accessibility needs, visit the browser-specific links below: